Support Team
This page includes valuable knowledge and information from the Hospice New Zealand Guide for Caregivers.
One of the biggest gifts you can give yourself or a loved one when navigating the end-of-life journey is a support team. This is likely to include your friends and family, but there are also many other professionals, organisations and support groups who may be able to support you and your loved one, depending on their needs. Accessing such palliative care services and creating a strong support network can make a real difference to the quality of life for your loved one. It’s also a good idea to find out what help is available in your community early on, even if you don’t need it straight away.
Who is your healthcare team?
It’s vital for your loved one’s comfort that you have good channels of communication with their doctor and other team members. The team may include your family doctor or General Practitioner (GP), palliative care physician, hospice care coordinators, hospice nurses, district nurses, counsellors, occupational therapist, pharmacist, dietician, complementary therapist, physiotherapist, social workers and a spiritual carer as well as volunteers, personal care workers or home support workers. While this team works with and for you, your primary family doctor (GP) is usually the best place to start with any medical queries you may have.
Communicating with your healthcare team
For as long as they are physically and mentally able, your loved one is responsible for making decisions about how they are looked after, and it is important that they feel empowered to always decide what is best for them, with advice from their support team. As their carer, you may find yourself working on their behalf with other members of your healthcare team, to make sure their personal, cultural, spiritual values are clearly understood and respected. It can help to set up clear lines of communication with your healthcare team, to make sure you and your loved one are always given the information you need, and that important information is always recorded so you can look back, in order to help guide future decisions. It can also be helpful to have other people present at meetings and appointments with members of your healthcare team, so you can focus on making sure your loved one is feeling supported, rather than trying to remember everything that is said.
Accepting help from your support circle
Family/whānau, friends and community, members of any social organisations or faith communities you belong to, ministers, priests or other spiritual advisers can all help to build a non-medical support network, to help you and your loved one. It can be helpful to reach out to people before you need them, letting them know your situation and asking for their support in the future, when it is needed.
Friends and family can feel helpless when they learn someone is dying, so by asking for their support, you are also allowing them to find a purpose and feel good about contributing to your loved ones’ needs. By helping out, whether it is picking up food or prescriptions, mowing lawns or cooking, or picking children up from school, they can feel that they are sharing the load in a positive, purposeful way.
Most people want to help, but they may not have been in this situation before and will be happier with clear instructions and boundaries from you on what your loved one needs and can accept. Do you need meals cooked? Do you need help with housework? Do you need someone to take on the job of phoning or emailing people with news of how your loved one is doing? Do you want people to drop by informally or is it best they let you know first?
Some people make a list of what they need done and put it on a board so visitors can sign up for a task; thus everyone knows who’s doing what and when. Sometimes making a roster for people to visit, sit with your loved one, cook meals or help with children is a great way for everyone to contribute, and also create a clear plan so your loved one always knows what is happening and so you can schedule some all important downtime.
Alternative and complementary therapies
Many people consider the use of alternative/complementary therapies when mainstream medicine can no longer offer a cure. If you are considering using alternative/complementary therapies, it is important to talk to your doctor about the therapies you wish to use.
Some therapies may interact with prescription medicines and it is important that you get the best out of all therapies. Some hospices have complementary therapists working within their programme of care – ask your hospice if they have this service available to you.
Talking about dying
Friends and family may be uncomfortable talking about death; it can often feel like a taboo subject that people don’t like to openly bring up. If you are comfortable about it, encourage people to talk openly about your situation, including how you and your loved one are feeling, what you are planning and the changes they are facing. People who are facing end-of-life have so much to offer, so the important thing is to manage their needs as well as possible, so they can continue to live, and enjoy, life. Even in palliative care, most people enjoy being surrounded by typical daily life, with visits from family, hearing about your day, listening to jokes and stories, reading the news, having people share their thoughts and plans and fears. This helps your loved one to still feel like part of the living world, and can help energise them and encourage them to keep actively living.
It may help to ask your loved one questions like:
- If I could change one thing to make things better for you today, what would that be?
- Who is someone you haven’t seen for a while that you’d like to catch up with?
- What is concerning you today and how can we change that?
- What are the books / films / poems you enjoy and could we share one together?
- How can I help you the most right now?
It can be useful to ask family members to think whether anything about their relationship with the dying person needs to be addressed, and to help them find the words to do it or ways to show it.
Being around young people can also bring joy. Find resources offering advice on how to talk to children about death.
How to manage visitors
Visitors are often welcome, but at times it can be exhausting for your loved one. There may be too many, too often, or they may stay too long. Talk about the possibility of limiting visits to 10 minutes. Some people find using a roster system for visitors is helpful. If you use email, send a weekly or daily email to a group of friends updating them on the situation, and include any tasks they can help with.
Most people want to help but may be unsure of how, be crystal clear and let them know what they can do.
